Wednesday, December 26, 2018

Acute necrotizing encephalopathy

A basketball-obsessed boy is now wheelchair-bound and unable to verbally communicate after he was struck down by a brain damaging illness triggered by the flu. But despite the horrific illness, the Steph Curry-obsessed kid is making a remarkable bounce back.

Andre Carson, 4, spent 11 days on life support after he contracted the H1N1 flu virus, which triggered acute necrotizing encephalopathy (ANE).

The extremely rare condition causes lesions to develop in regions of the brain, which causes swelling, bleeding and eventually the death of the organ’s tissue.

According to the U.S. National Library of Medical Science, only 59 cases of ANE have been documented in scientific literature and one-third of patients with the illness do not survive.

Andre’s mom Kamareia Parrish, 29, was horrified to discover her child unresponsive and barely breathing hours after the family’s doctor had diagnosed him with a common cold on March 29, 2017.

At 2 a.m., Andre, of Fresno, Calif., was rushed by ambulance to a local hospital before he was transferred to Valley Children’s Hospital in Madera, where he was placed on life support. Although doctors diagnosed Andre with ANE and began treating the illness with steroids, they told Parrish he had suffered severe damage to his brain stem and the left side of his brain.

“Andre was a friendly, active and bubbly little boy," Parrish said. “He was already in preschool when he became sick. He was getting ready to start t-ball and soccer that weekend. That Monday his preschool called me and said he was feeling sick so I went and picked him up. He had a sore throat, a fever, diarrhea and he had chills so I brought him straight to the doctor."

"He suspected Andre was suffering from a cold so I treated him with Tylenol and I put him to bed," she said. “That night at about 2 a.m. I went to check on him and give him his sippy cup and he wasn’t responding to me. I tried to stand him up but he was just limp. He was barely breathing. I was so afraid I called an ambulance and when I saw it arrive I just ran outside with him straight away. They stabilized him and intubated him, but it was very serious."

"A CT scan revealed that there were lesions on his brain and they discovered he had the H1N1 flu virus," she said. “After he was transferred to the other hospital, the lesions just kept getting bigger and bigger so they started treating him with steroids. The steroids managed to reduce the swelling in his brain but his brain stem and the left side of his brain had a lot of damage.

“They diagnosed him with necrotizing encephalopathy, this was triggered but the H1N1 flu virus," she said. “It was my lowest moment. I was so angry with God. I was questioning my religion. I told my parents that if Andre died they might as well plan two funerals because I would die too. I had to believe he would live. He spent 11 days in the ICU in total."

“They extubated him that Sunday and when he started breathing on his own I was so hopeful," Parrish said. “But he opened his eyes and he wasn’t responding. While it was nice to see them open, he was like a vegetable.”

Andre spent two months in rehabilitation, where he began to voluntarily move his limbs and track movements with his eyes. The little boy returned home on June 13, 2017.

More than a year after falling ill, Andre can only communicate using an electronic device and is beginning to take his first steps using a walker.

The little boy receives his nutrition through a feeding tube and gets around using a power wheelchair.

Parrish was forced to give up her career to become Andre’s full-time carer and said she never knew the damage that could be caused by the flu.

“I was so surprised that this all stemmed from the flu," Parrish, a single mom, said. "Andre was vaccinated but it was for a different strain of the virus. I was really angry at myself at the beginning because I kept thinking, what if I had brought him to the hospital sooner but my doctor has told me there was no way I could have known."

"Vaccinations are so important. I work closely with an organization called the End- FLUenza Project, which was started by a mom who lost her daughter to a strain of the flu," she said. "I don’t know where Andre picked up the flu but maybe if someone had gotten the shot or taken precautions to prevent the spread of flu, he wouldn’t have gotten sick. I’m really paranoid about everything now. If I could keep Andre in a bubblesuit for his whole life I would."

"He’s pretty much in a wheelchair all the time but he is learning to walk using a walker and lets me know what he needs with his communications device," she said. "Our goals for the year are to speak two-word sentences, to start walking independently, to grow his vocab."

The mom has high hopes that Andre will keep progressing and says the fact that he is alive is a miracle.

"It’s been so hard to watch his friends from preschool move on and start school," she said. "But I have to stay positive because he’s lucky. Science says he shouldn't be here anymore. I know he will keep trying and fighting. I know he’s the same little boy inside but he’s just trapped in his body. I know this because he's still obsessed Steph Curry, just like he was before he got sick. He's still obsessed with basketball - that hasn't changed one bit."

To donate to the End-FLUenza project or learn more visit

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